I knew that the genetic testing was important to understand if she was eligible for heart surgery, but I didn’t really realize at the time how MAKE- OR-BREAK IT that was. –LIZ HOLBROOK, GRACE’S MOM ‘‘
“They felt strongly that in order to proceed with something like open- heart surgery—something major that would put Grace through a lot—they needed to ensure that there was not a genetic finding that was incompatible with life,” says Liz. “It was the biggest relief that we could have.” Grace ultimately spent 90 days in the NICU at Rady Children’s and still had an uphill battle once she got home. Grace suffered from a variety of ongoing issues in her early years and had physical delays in her motor skills. The Holbrooks enlisted the help of physical and occupational therapists, plus a feeding therapist since Grace was sent home with a feeding tube and couldn’t take anything by mouth. She also had numerous follow-up appointments with cardiologists, gastroenterologists, surgeons and other medical professionals. Now five years out from her ordeal, Grace is a shy girl
with a sweet smile and infectious laugh who likes mermaids and unicorns. Her prognosis is good, and she is expected to live a normal life. Aside from routine pediatrician visits, she sees her cardiologist only once a year. “We still consider so much of the
team at Rady Children’s to be an extended part of our family. Every time we get the opportunity to see her surgeons and doctors, it really does just feel like this happy moment, that they were a part of saving her life and giving us the little girl that she is today,” says Liz. “She may need intervention at some point for a couple of things in her heart, but certainly nothing that would alter her quality of life or her ability to be the active little girl that she is,” Liz adds. “She’s a healthy, happy, vibrant 5-year-old.”
Grace spent 90 days in the NICU and underwent the first of many surgeries at just 5 days old
WINTER 2023 HEALTHY KIDS MAGAZINE 27
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